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What Happens If A Non-Celiac Gluten Intolerant Person Starts Eating Gluten Again?

dws

By dws
in Coping with Celiac Disease

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dws Contributor
dws
Posted

I was wondering if any of you non-celiac GI's out there have experimented with starting to eat gluten again. If you have tried, how did it go? When I first stopped eating gluten, it was like a miracle. The diarrhea that had plagued me for 20 plus years totally went away. That lasted for close to 2 years and then I started having trouble again. I have since felt some better after really tightening up on cc and trying to stay away from even gluten free processed foods. Obviously, I have become more sensitive to gluten than I was when I first stopped eating it. This may sound silly, but I sometimes wonder if I suffered through eating gluten again for a few months, would my body "reset" itself to where it was when I first stopped eating gluten, or... would it just be a disaster. I could cope fairly well with the diet changes I made when I first stopped eating gluten and I felt fantastic. Now, the diet I have to follow is extremely difficult and isolating and I have never felt nearly as good as I did before. Do I just have to accept the fact that this thing is going to contiue to chase me further into a corner, or is there some alternative approach that anyone has tried?

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Takala Enthusiast
Takala
Posted

One of the symptoms of being glutened is fuzzy thinking, whereby you start thinking that if you eat even more of it, it won't bother you anymore.

This is an auto immune disease, and because I went so many decades un diagnosed, plus I'm aging, I don't expect to feel "normal" per se, but there is no way I would be tempted to re introduce gluten, because my accidental cross contamination reactions are so bad.

You likely have additional food sensitivities besides gluten that you have not figured out yet, such as to milk proteins or soy. You may want to start keeping a food diary and write down everything you eat, and your reactions to it.

___

edited to add, after looking at your other recent posts:

I don't have much luck at all with processed breakfast cereals of any kind whatsoever, either. This might be a combo of subtle cross contamination and in my case, carbohydrate intolerance. I also mostly stick to bread type items I make myself out of higher protein seed, bean, and nut meals - but bread is not necessarily an everyday happening for me. If I want buckwheat flour, I grind toasted gluten free kasha in a dedicated coffee grinder, as I've heard lots of not good things about various brands of cc'd buckwheat flour unless it is from a buckwheat only facility, mail order. I grind nuts for nut meals in the blender. I can eat tapioca if it's something from the gluten free bakery, but it seems to make my ankles puff up, so I don't use it in my stuff very much anymore, unless it would be something I was taking to a group thing anyway.

I am not a fan of gluten-free anything made in a shared facility. It just seems so counter- intuitive.

Lately I started playing around with gumless gluten free flatbreads and then mini loaves, just to see if I could get the recipes to work, (go figure, I can't taste bean flour but I can taste xanthan gum) and when somebody asked for a gumless recipe I got one to work without eggs (what I normally use to replace xanthan) with using chia seeds in water. So I ate every experiment for about three weeks, and noticed that my ankles did not puff up the entire time. Now this weekend we treated ourselves to a loaf of something made by the gluten-free vegan bakery, and there it goes again, it's not a gluten reaction but it's definitely water retention, and the only two different ingredients would be tapioca and yeast, as this is made with guar gum- and I already have that daily in coconut milk. The winnowing continues :huh:B).

Having a gluten free house here makes a big difference. I eat a lot more fruits and vegetables than the average person on the dreadful "American" diet, so I don't consider this a restrictive diet so much as a healthier one which forces me to be creative.

domesticactivist Collaborator
domesticactivist
Posted

Takala, have you thought about corn? We experienced big reactions from arrowroot and buckwheat, too. Many alternative grains are cc'd and I don't think most (even dedicated) gluten-free bakeries take that into account.

anabananakins Explorer
anabananakins
Posted

I was wondering if any of you non-celiac GI's out there have experimented with starting to eat gluten again. If you have tried, how did it go? When I first stopped eating gluten, it was like a miracle. The diarrhea that had plagued me for 20 plus years totally went away. That lasted for close to 2 years and then I started having trouble again. I have since felt some better after really tightening up on cc and trying to stay away from even gluten free processed foods. Obviously, I have become more sensitive to gluten than I was when I first stopped eating it. This may sound silly, but I sometimes wonder if I suffered through eating gluten again for a few months, would my body "reset" itself to where it was when I first stopped eating gluten, or... would it just be a disaster. I could cope fairly well with the diet changes I made when I first stopped eating gluten and I felt fantastic. Now, the diet I have to follow is extremely difficult and isolating and I have never felt nearly as good as I did before. Do I just have to accept the fact that this thing is going to contiue to chase me further into a corner, or is there some alternative approach that anyone has tried?

dws, I was gluten free a month while experimenting with the paleo diet, and when I started eating tiny amounts gluten again I got really sick. At that point I started researching and realised I'd have to do a gluten challenge in order to be tested. The first week of the challenge was the worst - I was running to the bathroom constantly. After awhile I felt like my body started getting used to it again, by which I mean the heartburn, fatigue and stomach aches went back to feeling "normal" (instead of the sudden, dramatic reaction of a glutening now). But it's no way to live a life. I did a four month challenge and tested negative twice during that time, once I got the second lot of results I went gluten free, permanently. I'm back to trace amounts making me really sick.

Going gluten free wouldn't make you feel fantastic if gluten were not a problem for you. But there might be other things that are a problem too. Keep a food diary, and see what you can learn about the foods that still bother you. I found that onions (high in fructans) are an issue for me, but after cutting them out for a few months I've found I can tolerate small amounts.

dws Contributor
dws
Posted
  • Author

dws, I was gluten free a month while experimenting with the paleo diet, and when I started eating tiny amounts gluten again I got really sick. At that point I started researching and realised I'd have to do a gluten challenge in order to be tested. The first week of the challenge was the worst - I was running to the bathroom constantly. After awhile I felt like my body started getting used to it again, by which I mean the heartburn, fatigue and stomach aches went back to feeling "normal" (instead of the sudden, dramatic reaction of a glutening now). But it's no way to live a life. I did a four month challenge and tested negative twice during that time, once I got the second lot of results I went gluten free, permanently. I'm back to trace amounts making me really sick.

Going gluten free wouldn't make you feel fantastic if gluten were not a problem for you. But there might be other things that are a problem too. Keep a food diary, and see what you can learn about the foods that still bother you. I found that onions (high in fructans) are an issue for me, but after cutting them out for a few months I've found I can tolerate small amounts.

Thanks for your input. I have tried an elimination diet before. One of the things that makes a lot of this difficult for me is the fact that I am skinny. I start losing weight whenever I try an elimination diet or if I try to go paleo. I mean to the point that people stop and ask me if I am sick or something. I also lost about 15 lbs when my intestinal problems returned before I got more extreme with my gluten-free diet. The weight comes off easy and is hard to gain back for me. As far as being sensitive to other foods, I guess that is possible. When I first went gluten-free, I could eat anything as long as I stayed away from gluten. Why other sensitivities would pop up when I am 46 y.o. is a mystery to me. The doctors I have seen including Alessio Fasano are really doubtful when I ask them if other foods could be giving me problems. One thing that I am coming to terms with is the fact that anything that has a lot of fiber causes problem. I ate avacado, a lot of pistachios and some beans yesterday and had a very painful day today. Same thing happens if I eat cassava or gluten free oatmeal. 4 years ago, none of these things gave me problems. I guess I just have to go with the flow and go wherever this thing chases me without worrying about why it is happening. I am just the type of person who likes to try to fugure things out scientifically. I, just like my doctors am totally stumped.

anabananakins Explorer
anabananakins
Posted

Thanks for your input. I have tried an elimination diet before. One of the things that makes a lot of this difficult for me is the fact that I am skinny. I start losing weight whenever I try an elimination diet or if I try to go paleo. I mean to the point that people stop and ask me if I am sick or something. I also lost about 15 lbs when my intestinal problems returned before I got more extreme with my gluten-free diet. The weight comes off easy and is hard to gain back for me. As far as being sensitive to other foods, I guess that is possible. When I first went gluten-free, I could eat anything as long as I stayed away from gluten. Why other sensitivities would pop up when I am 46 y.o. is a mystery to me. The doctors I have seen including Alessio Fasano are really doubtful when I ask them if other foods could be giving me problems. One thing that I am coming to terms with is the fact that anything that has a lot of fiber causes problem. I ate avacado, a lot of pistachios and some beans yesterday and had a very painful day today. Same thing happens if I eat cassava or gluten free oatmeal. 4 years ago, none of these things gave me problems. I guess I just have to go with the flow and go wherever this thing chases me without worrying about why it is happening. I am just the type of person who likes to try to fugure things out scientifically. I, just like my doctors am totally stumped.

I can see why the losing weight fear would make you loathe to try elimination diets. I'm overweight myself so they don't hurt me in the same way.

The research into FODMAPs is quite new and mostly coming out of australia. Avocado is on the list, so are beans and I think are pistachio. I would recommend looking into it.

Here is some more info you might find useful: Open Original Shared Link

Open Original Shared Link

I didn't notice these things causing me problems until after I went gluten free. Before then I used to think the digestive issues were normal.

Hope you feel better soon.

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